Coping with Myositis During the Holidays

Adapted from an open discussion by members of the Myositis Support Group of Hospital for Special Surgery

Angela Hunter, LMSW Myositis Support Group Coordinator

Most of the time, the holidays are marked by joy and celebration. It is the season for giving, and it generally puts people in a good mood. Yet, for people dealing with a chronic condition like myositis, the holidays can also bring a great deal of stress and frustration. Many of the holiday traditions of our group members have changed because of their fatigue, pain, and limited mobility. Though they look forward to the excitement that the holidays bring, they have to adapt to doing things in a different way to take their symptoms of myositis into account.

The following describes challenges posed by different holiday traditions as well as helpful tips offered by our Myositis Support Group members:

1.Holiday celebrations often involve exchanging gifts.

Unfortunately, the act of shopping can present many obstacles for those dealing with myositis:

Transportation to the stores.

Carrying shopping bags.

Maneuvering around other shoppers.

Cold and snowy December weather.

One member talked about learning to shop on the internet to have purchases delivered directly to the home of the person receiving the gift. Another group member mentioned finding a present that can be given to several people in order to cut down on the amount of time spent searching for individual gifts.

2.The holiday season also brings invitations to holiday parties.

Group members talked about how they are often invited to holiday parties by their workplace, spouses, families, children, friends, or neighborhood. At these parties, most people are not aware of the myositis, especially when symptoms aren't visible. At such, most guests stand, which can be difficult for people with myositis who need to sit down and rest for a bit. Sitting at a party can cause a person to feel:

Left out of conversations.

Worried that they are perceived as unsociable or lazy.

Afraid that others will see them struggling to rise out of the chair.

Viewed as not enjoying the party.

The group also talked about what it's like to use a wheelchair, walker, or cane at a party. The group shared that, at times, the increased visibility can make it somewhat easier because others understand the person's difficulty in navigating the room and may make a point to come over. However, when holiday parties are held in locations with little space to move around, it can be frustrating to sit in one place all night and be dependent on others to take the initiative to come over and chat.

Using an assistive device to move around can also pose a challenge to fixing a plate of food or grabbing a drink. This also adds to a feeling of dependency, especially when there's a need to ask strangers for help. An additional concern for users of wheelchairs and walkers is that the host of the party might experience it as a burden, especially if they need to make adjustments to the room or tend to the person during the party.

If you use a wheelchair, it was suggested that you let other party guests know that you would prefer to have them sit next to you, rather than stand over you. You can ask your host to help with introductions. When someone is getting a drink refilled, you can ask if they can get one for you also. This is a common request, and wouldn't necessarily be viewed as dependency. It is important to find ways to assert yourself. Smiling, laughing, and conversing with others will help others notice that you're enjoying yourself and will draw them to you, even if you're not able to easily circulate around the room.

Group members discussed their feelings about passing up sweets and alcohol because they want to avoid weight gain and have been told by their doctors to avoid alcohol. Sometimes, group members decide not to eat certain foods because they are unsure whether or not they will cause side effects with their medications. The group talked about whether or not they would be able to share a toast on New Year's Eve.

One group member said that one of her favorite parts of the holidays used to be cooking, but now she has difficulty carrying pots and pans and shopping for groceries. Another group member said that she used to host her entire family every year and would spend a lot of time decorating the house and cooking their favorite dishes. With myositis tiring her so easily, she is sad that she is no longer able to host the holidays.

The group talked about the time it takes to adjust to these new traditions and to accept their individual limitations. While this is often challenging, it is important to keep in mind that there are many ways to participate in the holidays, and the new traditions might even end up being more fun and exciting than the old ones.

4. Many people create memories through traditional holiday activities.

New York City has a lot of holiday attractions that many group members remember fondly as part of their traditional holiday celebrations. Visiting the tree in Rockefeller Center, watching the holiday show at Radio City Music Hall, ice skating in Central Park, looking at the windows at Saks Fifth Avenue, and shopping are all fun holiday activities. However, they all require extra physical exertion, which can be difficult for people with myositis. These activities often present such challenges as:

Walking long distances.

Moving quickly with the flow of people.

Waiting in long lines.

Climbing theater steps.

Maneuvering through large crowds.

Withstanding cold weather.

Group members mentioned that the fatigue associated with myositis often makes these activities very difficult. They felt sad having to miss the activities they once enjoyed, and excluded when those around them continued to take part in these activities. The group thought it could be beneficial to find new places to visit at the holidays, and considered that they might need to be the ones to organize the outing for their family or group of friends.

5. The holidays often mark the beginning of winter weather.

Having a disease that affects mobility can make a person more susceptible to inclement weather, which can also impact holiday celebrations. With the winter weather approaching, the group discussed anticipated challenges. One group member mentioned how much extra planning it takes just to go outside the house in the winter. She said that dressing herself with extra layers takes longer, and sometimes she needs to make sure that someone will be around to help her get ready. Another group member said that she is most nervous about icy sidewalks and curbs. Getting around is already difficult with a cane, walker, or wheelchair; cold, icy weather makes it worse.

Winter weather can also cause isolation for people with myositis who face challenges when traveling outdoors. Since leaving the house takes a lot of energy and planning, group members shared that it was often easier to stay home. However, being stuck inside can create feelings of depression. The group said that they find movies and television helpful in keeping them entertained. Another member encouraged the group to find a hobby, such as an arts and crafts project, to give them a goal to accomplish.

The holiday season is often a good time to reflect on your life and the many changes you've gone through. It can be beneficial to spend some time setting goals for the upcoming year.

About the Myositis Support Group at HSS

Learn more about the Myositis Support Group, a free support and education group held monthly at Hospital for Special Surgery.

Presented: 12/8/2004
Posted: 3/11/2005
Reviewed: 11/3/2009

Summary prepared by Angela Hunter, LMSW, Myositis Support Group Coordinator